So... while we were hospital bound, we used the alcohol cleansers (Avagard) mounted at every door and washed our hands A LOT. I really can't type that in a large-enough font.
I used so much alcohol and soap that, a week later and despite gobs of super-hydrating creams and lotions, the backs of my hands are still covered in scales from being so dried out.
Now I wouldn't worry about it quite as much if I knew that everyone washed their hands.
So wash your hands, people!
Here is Bridgette demonstrating how it's done
Later on Saturday, we got a special visit from Aunt Heidi and Cousin Ellie.
Ellie and Bridgette rode together to the playroom for an evening of fun. Ellie even helped Bridgette with vitals by being an eager participant. She demonstrated how to stand still and patient while being examined. It was pretty cute.
Also, Heidi brought me four new shirts. And I can't tell you how nice that was since I'd worn the same one for a couple of days straight.
When Jeff left Saturday night, we got this really great video. I love it.
I really, really lub it.
I wrote a nice long blog on Sunday, so there's not much more to report except that we also had a Sunday evening visit from our neighbors, the Banner family. It was very kind of them to come and pleasant for us to visit with friends.
They brought their girls, so we had another romp in the playroom.
They also left Bridgette a big bag of small gifts in colorful wrapping-paper. The object was to use the gifts as bribes/rewards (again, call it what you will) to help Bridgette take her meds or get her vitals taken or lay down to sleep or whatever.
And you know what? Most of the time it worked! Many thanks for that...
Here is Bridgette with her new Snow White doll, the first gift she unwrapped. After the Banner's left, Bridgette decided Snow White needed some dinner. In the first photo, Snow White is getting a drink. In the second, she's eating some Cheerios. Mmm...
When Jeff left Sunday night, he took the camera with him, so these last four hospital photos were taken with my cell phone.
By Monday, Bridgette had learned enough to get an honorary nursing degree. First she examined herself...
... then she gave Snow White a once over.
And here is Bridgette on Tuesday evening, right before we came home. Do you see the new outfit? We had run out of Pedialyte, so during her nap I escaped to the store for some more.
And at the store there was a pink, sparkly cap. And it *called* to me.
It said, "Kelly! Psst. Kelly! Bridgette's had it rough. She *needs* me! Connect me to my rightful owner!"
So I bought it.
And then I got her some new outfits to match her hat. 'Cuz I'm a girl.
I mean, come on. *I* had come to the hospital with two shirts (one for day, one for night), and when I got those four new shirts from Heidi I couldn't have been happier to have something fresh. So, why would Bridgette be any different? She also went from two hospital shirts to... four more. :)
When I came back with them in hand Tuesday afternoon, I actually populated the built-in drawers, and at the time I thought, "Wouldn't it be funny, now that we're 'settling in,' if they sent us home?"
You know, Murphy-style. Only in a good way.
The same way it rains every time I dry my hair (which is not all that often). And that's a bad thing, but funny.
And what do you know? THEY SENT US HOME!
Next time I'm buying Bridgette an entire wardrobe the day we're admitted... and I'm unpacking immediately.
I also like the following photo. It is lovingly titled "Fake Fear."
She had watched all the hospitals videos and could easily predict when the "scary" parts were coming. Moments before said-scenes reared up to devour us, she would say, "Mom! Aaaaah!" and begin to shake her arms while wearing this expression.
And here she is Tuesday, about 8:30PM, when we pulled into our garage at home.
In fact, the moment we pulled out of the PCMC parking lot she was zonkered. Poor exhausted sapling. Which I guess brings me up to the point when I need to update you.
Funny, huh? You thought I was almost done.
This is really detailed, so if you're not interested, skip to the bottom for the remaining pictures.
Since we've been home, we've seen gradual improvement.
For one, she's slept through the nights like an angel since the first night we returned. Obviously sleep helps. We've both taken erratic naps, some lengthy and some short, trying to get back to normal.
Her belly has gone back and forth between high distention and low distention. Sometimes it scares me.
Her eyes have gone back and forth between hydrated and dehydrated. Sometimes it scares me.
The diapers haven't slowed down. We have changed a slew.
Sometimes her poop has been runny and green.
Sometimes it has been thick and bloody. That definitely scares me.
Sometimes it has been pale and mushy.
We don't get it.
We never do.
She's got terrible diaper rash. Her skin is raw and bloody and she cries at almost every change. And those changes are frequent beyond what most people can imagine. Some of the diaper rash is caused by the frequency of her poop, some of it has to do with the content (high acid levels), but we also think that some of the diaper rash is being caused by chronic yeast, so our creaming process is complicated again.
(Remind me sometime to post "Mom's Magical Butt Cream," and I'll tell you about my favorite mix.)
But! Having said that, over the last 5 days, we believe we've seen her health improve incrementally. This morning, for the first time, I changed a diaper that looked a lot more like normal poop. Or, at least it was brown.
In the end, we still don't know what sent her intestines into arrest. The best working theory is that she got a minor viral bug that shocked her system and caused her intestinal wall to become inflamed and hyper-stimulate mucous production. We don't know if her immune system mended the problem on its own or if the new anti-inflammatory drug calmed things down.
Dr. Harnsberger said, "It's not over. You can expect to have more trouble. But it should calm down by the time she's five." While some of you might think this distressing, and I suppose I do to, I'd also rather have a realistic view of our future. Candy-coating doesn't help us a bit.
For now, Bridgette is going to be on Sulfasalazine until... who knows? As I understand it, Flagyl is an antibiotic with anti-inflammatory properties, while Sulfasalazine is an anti-inflammatory with antibiotic properties. But Flagyl has more long-term negative effects while Sulfasalazine is a drug that some people take (safely) for a lifetime.
We have a follow-up with Dr. Harnsberger on March 10.
One thing we do know is that hospitalization was absolutely necessary to Bridgette's survival, mostly for hydration.
The Botox injections were a forward-looking prophylactic exercise, given that our new GI has ample evidence (or says she does) that anal sphincter retention and HD go hand-in-hand. If the Botox works and then wears off, we will probably do another surgery to permanently relax the sphincter, so we don't have to do repeat injections over the years.
In addition, I'll recap all her tests. (Because Gram wants to know!)
You know... somehow I also really hope that one day this blog will be useful to another HD parent who is experiencing difficulty and is researching options and details.
So, her first KUB showed significant distention. Her second KUB showed distention reduction.
Stool tests included Shigellosis, C diff (3 different times), E coli, Salmonella, Norovirus, Rotovirus, and Adinovirus -- all of which came back negative. However, she was fecal occult blood positive, probably due to bowel inflammation.
The GI did blood draws to test other stuff, namely Celiac Disease as well as allergies to whey, casein, dog dander, egg, and wheat protein. All came back negative. In fact, she's so *not* allergic, her levels essentially didn't register.
Additional blood work was done to test Serum IgA and Vitamin B12. Both came back within normal limits. The latter is important because the absorption of Vitamin B12, although ultimately complicated, occurs primarily in the colon because it is a water-soluble vitamin. It is involved in the metabolism of *every* cell of the human body and has a key role in the normal functioning of the brain and nervous system.
Since Bridgette has had some developmental delays over the years, there was concern it might be Vitamin B12 deficiency related. We had already discussed the possibility of adding Vitamin B12 supplements (pill form -- yeah, great) to her diet, but when her results came back, we felt there was no need. Bridgette's levels were not just normal, but fairly high. *And* they took the blood draw when she was the sickest. So, that's kind of amazing actually.
The GI said that when a person has no colon but still has high Vitamin B12 absorption, the B12 level acts as an indicator that other micro-nutrients are being absorbed also and will be at good levels too. So, as far as I'm aware, no other micro-nutrients were tested.
The GI and the Pediatric Glasgow team were both worried about Bridgette's weight-gain. They sort of made me feel like a bad mom, but I promised them that I do feed her.
Although she certainly grew taller, she only gained about one pound over the last year. The GI wants us to pack her meals with fat and protein.
Well, we were already trying to do that. But she's limited to certain foods and she's two. So... she's not exactly willing to eat whatever we put in front of her. Add to that she kind of eats like a bird (for periods of time), and she always loses weight when she gets sick. A pound or two on, a pound or two off.
Over the last year we had found winners in scrambled eggs, sausage, and peanuts. We can't do the same kind of packing a lot of people can because we still have to limit certain foods... like dairy (talk about fat and protein), high sugar (which converts to fat), and high fiber (like, well, so much stuff -- but that includes beans which are high protein). We also found that she doesn't digest avocado well. And of course, that doesn't count the stuff she just won't eat... like beef.
But, since we've come home... I think she's put on 2+ pounds.
1) She hadn't eaten a good meal in three weeks, so she was hungry.
2) We had tried peanut butter in the past, but she wasn't interested. But she "discovered" peanut butter at the hospital (see past blog entries).
4) She has eaten almost nothing but peanut butter since her return home.
How much, you might ask? Well, I refer you to the title of the blog.
She's on her third jar.
That's a lot of peanut butter.
She calls it "Buzz!" or "Beez!" Another of a million cute Bridgette-isms.
The first two jars were a little over a pound apiece. She cleaned us out, so we bought more.
This time the jar is 40 oz (2 pounds 8 oz) and she has eaten 1/4 of it... almost a pound.
I'm not sure whether her weight gain is translating yet to the rest of her body, but it's at least accumulating in her gut. We're experiencing a long but constant peanut buttery transit time. Mmm...
And to end this blog, many cute photos from yesterday, when she was having some fun climbing around on her fort and playing outside.
You can call her peanut butter face. :)